Tuesday, January 29, 2013

Six lessons from euthanasia deaths in Belgium

They look at you with mild detachment. Not aggressive. Not friendly. Not happy. Not sad. Just detached. Two balding middle-aged Belgians with shaved heads, scruffy growth, and dark-rimmed oval glasses. The left ear of the man on the right juts out at a sharper angle. But otherwise the two faces are one face. They were the face of 45-year-old identical twins Marc and Eddy Verbessem.

Two weeks before Christmas, a doctor euthanased them at Brussels University Hospital. It was a perfectly legal procedure. All the boxes had been ticked and all the documents signed. The two men were deaf and slowly going blind as well. They had nothing to live for. They qualified.

But nearly everyone felt that there was something inhumanly cold about a society which failed these simple men when they could see and killed them when they couldn’t.

As a paradigm case of Belgian euthanasia, it pays to examine how it unfolded and what it reveals about a legalized right to die.

* * * * *

Marc and Eddy Verbessem were born deaf. They never married and they lived together, working as cobblers. When they discovered that they had another congenital disorder, a form of glaucoma, they asked for euthanasia. They could not bear the thought of never seeing each other again.

According to their local doctor, David Dufour, they had other medical problems as well, including debilitating back pain. "All that together made life unbearable,” he told the London Telegraph.

Their family opposed their decision. So did the local hospital. It took them nearly two years to find a doctor who was willing to administer a lethal injection under Belgium’s euthanasia law. This was Professor Wim Distelmans, a well-known euthanasia activist. He seems proud to have played a key role in "the first time in the world that a 'double euthanasia' has been performed on brothers”.

On December 14, dressed in new suits and shoes, reluctantly accompanied by their brother and their parents, they arrived for their appointment with Professor Distelmans. Dr Dufour described their final moments to the media: “They were very happy. It was a relief to see the end of their suffering. They had a cup of coffee in the hall, it went well and [they had] a rich conversation. The separation from their parents and brother was very serene and beautiful. At the last there was a little wave of their hands and then they were gone.”

But a fig leaf of smarmy words cannot hide the fact that the twins were killed by their own doctor. Even supporters of euthanasia felt uneasy.

Lesson one: the expanding circle.

Under Belgian law euthanasia is allowed if “the patient is in a medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from a serious and incurable disorder caused by illness or accident”.

But the Verbessem brothers were not terminally ill. A doctor at their local hospital said, “I do not think this was what the legislation meant by 'unbearable suffering’". Professor Distelmans was nonchalant: “One doctor will evaluate differently than the other."

In an email interview, Jacqueline Herremans, president of Belgium's Association for the Right to Die with Dignity, told me that euthanasia should be made available to many more people:

“When we opened the debate almost 15 years ago, the first thought was for people suffering from incurable cancers. And it is still cancer which is the origin of almost 80% of the cases of euthanasia. But we must admit that suffering may exist in other circumstances. MS, ALS, Parkinson’s are obvious. But what about psychiatric disorders without any possibility of cure? What about ageing persons with several medical affections losing their autonomy and seeing no more sense to their life, knowing that tomorrow is going to be worse than today? What about Alzheimer’s patients?”

Marc and Eddy Verbessem’s problems were complex. They were shy and withdrawn. Soon they would be not only deaf but deaf and blind. It was difficult for doctors to communicate with them. The easiest way to unravel their social problems was to end them forever.

However, as deaf communities pointed out, being deaf and blind is not a death sentence. After all, America’s best-known deafblind person, Helen Keller, travelled the world, wrote books and became an ardent propagandist for socialism.

In fact, a Canadian deafblind activist was dumbfounded. “I wonder if the deafblind Verbessem twins know… the education that was available, the Deafblind community in Belgium around them, the tools that were out there for them to keenly acquire so that their fears of going blind would be soothed with their own amazement and comfort?” Coco Roschaert wrote on her blog.

More to the point: did the doctors who euthanased them know? Did they care?

Lesson three: safeguards are meant to be hurdled.

Supporters of legalised euthanasia insist that safeguards in the legislation restrict euthanasia to the most difficult cases. In fact, it is becoming easier and easier to be euthanased in Belgium. A report published late last year by the Brussels-based European Institute of Bioethics has claimed that euthanasia is being “trivialized” and that the law is being monitored by a toothless watchdog. After 10 years of legalised euthanasia and about 5,500 cases, not one case had ever been referred to the police.

The case of the Verbessem twins also shows that the procedure is far from transparent. If a prisoner dies in jail, all the facts are made available to the public. If a patient is euthanased, the public may never even find out that it happened. For example, little is known about the health of the twins, how they communicated with the doctors who killed them, whether their social support was adequate, why another hospital had turned down their request, how much counselling they had received.

Doctors naively – or is it arrogantly? – want the public to know as little as possible. “I have been very surprised [that] there is so much interest and debate about this,” Dr Dufour said.

Lesson four: if you’re disabled, you’re in trouble.

Professor Chris Gastmans, of the Catholic University of Leuven, criticised the deaths as an impoverished response to disability. "Is this the only humane response that we can offer in such situations? I feel uncomfortable here as ethicist. Today it seems that euthanasia is the only right way to end life. And I think that's not a good thing. In a society as wealthy as ours, we must find another, caring way to deal with human frailty."

Lesson five: compassionate euthanasia has a price tag.

Both Eddy and Marc were charged 180 Euros each for transporting their bodies back home. This macabre detail shouldn’t surprise us. China also charges the families of the people it executes. It's called a bullet fee.

Lesson six: not enough Belgians are being euthanased but the government has a plan.

In 2011, the last year for which official figures are available, 1133 people were euthanized in Belgium. A few days after the Verbessem brothers died, the government announced that it would amend the law to allow minors and people with dementia to be euthanized as well.